Monday, January 11, 2010


I had a clinic appointment last week that I've been a bit reluctant to post about. Partially because I'm disappointed with myself, and partially because sometimes I can't help but feel like I'm just being so damn dramatic. Before I talk about last week's appointment, let me back up a little. When I was discharged on November 25, my FEV1 was 54%. I was terrified at the thought of going home with such low lung function (for me). Before I was sent home there was a debate over whether or not I should stay a while longer and, surprisingly, I was the one arguing to stay. But, because of the Thanksgiving holiday nobody would be around for me to do pulmonary rehab for 4 days and my doctor believed that I could make more progress at home rather than cooped up in a tiny hospital room. Also, it was a well known fact that the lack of sleep coupled with the seperation from my nursing baby had turned me into an emotional and hormonal monstrosity and I think they were getting tired of the phlebotomists leaving my room in tears.

At home, I continued to do 3-4 treatments a day and took my medications religiously. When I went back for my discharge follow-up two weeks later I was at 67%. I was happy (well, happier) with this number and felt pretty optimistic that I was on my way back up. But just a few days later I started to get a runny nose. Soon it turned into a full blown head cold which, for me, always means a pretty good cough is in the works.

(Something related: I've always struggled with sinus problems. By the time I was 10 I'd been through 3 pretty major sinus surgeries. SO OFTEN a simple cold that starts in my sinuses becomes a lung infection. We know this is a problem and have recently talked about the possibility of another surgery.)

For the last month I've done my treatments, exercised and taken my vitamins like I should, but I just can't seem to get back up to par. I think a lot of it is due to the ample amount of stress in my life right now. Add to that the fact that I've always had immune system deficiencies, I work with the public on a daily basis and I have a 5 month old who so generously shares all the germs she picks up in day care. Is it any wonder I spend half my life feeling ill? When I went to clinic last week I blew a 59. Now here's where I feel like I'm being dramatic. I know that for some people 59% is awesome. But for me, someone who has spent the majority of my life between 85-95%, 59 is devastating.

The good news is that nobody feels this is a permanent downward trend or that I will have to accept a new, significantly lower baseline. The entire CF team is very optimistic that I will be able to get my scores back up. The consensus seems to be that I'm still unstable from getting so sick so fast and, after all, it is still cold and flu season. I'll be starting some new meds: azithromycin daily and Tobi on alternating months. I was also given some sinus rinses that are an absolute godsend. I've never used any antibiotic chronically, so I'm hoping this will be quite a shock to my system and that it will give my body the jump start it so badly needs right now.

(Another tangent: I used to regularly argue with my doctors about chronic medication. The first time I went to the adult center at the U of U, I was sitting at 97%. They were impressed with those numbers, but wanted me to start doing Tobi "just to mix things up"... seriously, that's what they said. I was strongly opposed to that idea. I understand now that a lot of CF treatment is prevention, but my thinking used to be why risk over utilizing any medication when I'm doing so well? If and when I need it down the road, what are the chances that the bugs will be immune from me using something when it maybe wasn't necessary? At that very first appointment I ended up telling the doctor that she could write the prescription if that would make her happy, but there was no guarantee I'd ever fill it. I think I left somewhat of a brazen first impression.)

So here I sit, anxioulsy awaiting the arrival of my meds. For the first time I'm being absolutley compliant with my doctors, and it's actually a good feeling.


  1. I know how you feel about the 59%. But I believe you can get it back. For about 3 years I stayed anywhere from 60 to 70 and sometimes 80%... this was from not doing any meds, no exercise and not a lot of food.... I lived on mountain dew seriously. After cipro I was at 80 something percent and 3 months later of neglcting cf I was at 60 again. So my doc told me that if I kept it up in 3 years I would need a transplant. Of course this woke me up and I started taking care of myself. It took a while but a year later I was back to 80 and a few months later I was at 90. Then the baby happened and now I'm at 82 trying to get it all back.
    The reason I went into all that is that I have been where you are and I just know you'll get back, it just takes time.
    Oh and my clinic did the same thing with me about Tobi. At the time I was doing great, then I got sick and took it one month, although I was supposed to be taking it all the time. I started taking it like I was supposed to right before I got pregnant and have been taking it ever since. I can tell a difference, but it makes my lungs really tight. Oh and I love sinus rinses!
    And the stress really affects me as well. Idk if you already take anything for allergies or not but I swear once I started taking zyrtec it seemed to help my asthma along with allergies and I started seeing better numbers as well too. But everyone is different and I know zyrtec for lungs sounds really stupid. lol
    Ok I'm done finally lol

  2. Misha-
    Thanks for your comment. I also have a question for you: Were you on Tobi while you were pregnant? There has been some question as to whether it's safe to take while breastfeeding and I keep getting conflicting answers. I think as a general rule, if something is okay during pregnancy it is also fine for breastfeeding...
    Any thoughts?

  3. I am sure you do sinus rinses cause Jenn loves to pass those out like candy ;)

    BUt if you don't they are wonderful!!!! and They work!

    Also I drink apple cider vinegar a tablespoon am and pm it helps with immune system and I think it helps sinuses

    I would be happy to tell you all the homeopathic things I do. are you on Face book or I can e mail it to you... I run everything by Dr Liou before I start them to so they are safe.

    I think TOBI will really make a difference for you. Let me know how it goes Ill keep my fingers crossed downside of TOBI is it takes forever!

    And I agree with you if its safe to take during pregnancy its def safe while breast feeding but I am only a PP not a RN or MD ;)

    PP=Professional Patient :)

    Good luck and keep your chin up!

  4. Thanks Somer!
    My e-mail is: and I'm open to any and all advice! I've always been big on homeopathic remedies!

  5. I was told TOBI was in a class that's not good for pregnancy but that was only if it were goin straight to the developing baby but because it's inhaled it stays in the lungs and doesn't get to the baby and if it does it's not much. I was told this by ALL my docs both OBs and my cf doc. They also told me it was fine for breastfeeding as well. But I have to say the whole time I was breastfeeding I didn't really do many treatments so I can't say how much I was really doing during that time so she didn't really get any in the milk anyway but she's completely healthy. I would really be more afraid of something that went straight into your system like oral meds or maybe IVs, but I don't know how IV's work. But I hope it helps you, I know the first time I did it I bounced back so quickly. I was sick as a dog and like 2 days later I was running off and leaving my mom when we went for our walks so good luck and God Bless

  6. Hey, I left my last clinic visit (Wednesday) on the TOBI cycle too. I've never had any real results from TOBI until this month, when it literally worked a huge miracle with a cold I had. I went from being absolutely positive I was going to the hospital to thinking I could actually stay out.

    And hey - 59% is low. I think anyone will concede that point, even those who are lower than 59. I am praying for you in getting those numbers back up! Good luck. And the sinus rinses are AMAZING.

  7. I had a peak taken when on inhaled TOBI and it was zero. I did this while considering whether I would take it when pregnant. TOBI is delivered direct to the source and little to none of it makes it into your blood stream let alone your milk. TOBI is not effective taken orally so even if a little got in your milk it woudl not be available to the baby to use by taking it orally. It is completely fine. I cannot for the life of me remember the website but if you go to and do a search in the pregnancy section you will see numerous discussions we have all had and a really handy website of the foremost authority of medications and breastmilk.

    I wish I could say the cold/flu's get better but they really dont the kid thing just makes it so easy to pick anything up. I am eagerly awaiting spring myself. I think the second year was better but it depends on the season, my daughter is three and this has been the worst one yet for me catching stuff she's had.

    Ihope you are doing your sinus rinse's religiously, I cant believe someone would let you have all those surgeries and never tell you to rinse. I really swear by Neil-Med sinus rinse's. I think you will find a ton of people who do. Google them or they are available for $10 in most grocery/pharmacies.

    Good luck and keep up good work



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